May 3 – I traveled to Florida to see Zan and take care of paperwork such as power of attorney and his application for Medicaid. I arrived late Friday (May 3) so I didn’t go to the nursing home, but called Mark, Patricia and Tumbi to let them know that I was in town.

May 4 – I went to see Zan Saturday morning. He was very frail, but he recognized me and he tried to talk although he said he had a sore throat. At times you could barely hear him. I was able to speak to a nurse and she told me that she had not been giving him the Roxanol. She said that she didn’t intend to give it to him unless he indicated that he was in a lot of pain. Zan was coherent at times, but other times he didn’t seem to make sense. They are no longer dressing him, he wears a robe and a diaper. I wasn’t able to get him to eat much – just some Ensure. Because of his condition, I didn’t think that I should give him the Power of Attorney (POA) forms at that time. I spoke to Artie and Henri to update them on his status. As always they had encouraging words and told me to “hang in there”. Mark came by about 16:30 so I took a break and returned at 18:00. When I returned Patricia was there also. She managed to get Zan to eat a few mouthfuls of his dinner and drink some Ensure mixed with milk, but he didn’t want much and ended up spitting out some of his food. Mark and I left about 21:30 and Patricia shortly after. Mark and I had several conversations about Zan’s health, future plans, moving him to Miami and the status of the boat. I know that Zan would want Mark to have the boat if he wanted it so I told Mark that he could pay the storage (about $60) and keep the boat or I could pay it and sell the boat. I agreed to call the guy keeping the boat and find out the exact situation.

May 5 – I went over to see Zan at about 11:00. He was totally unresponsive. The nurse came in (different nurse from last night) and was about to give him medication when I asked what it was. She replied ‘Roxanol’. I asked why and she said it was on his plan. I explained to her that I wanted him to only get it when he was in pain because of the effect it seemed to have. She agreed and left. His eyes were open, but he wasn’t moving or blinking, or anything. I tried for about an hour, then I went to find the nurse. She checked the book and found that he had been given Roxanol at 18:00 the previous night and at 06:00 that morning. I repeated my instructions about the medication and she called his doctor to confirm that it was OK to make the change. The doctor agreed that Roxanol would only be administered when Zan indicated that he was in pain or when his respiration reached a count of 30, which would indicate that he was having problems breathing. I spoke to the nurse about having a hospice group come in to provide additional care. She called and made an appointment for me to talk to them on Monday. She also gave me the names of the facility social worker and the director so I could get answers to my questions about the POA and other legal documents. I left soon after since Zan didn’t seem to know that I was there. I went to Ft. Lauderdale and met and visited with Tumbi and some of her friends. Pat went to see Zan about 19:00 and said he ate a little for her and that she helped him out of bed so he could use the bathroom. She said he spoke a little and seemed cognizant.

May 6 – Today was my return date. Zan was in a much better state when I saw him. There was another new nurse (I guess the others were the weekend shift), so I informed her of the Roxanol situation. She didn’t know about the change, but she added it to her notes also. I met with the representative from hospice who gave me an overview of the program. I told her that I would make a decision on whether to enroll in a few days after talking to social workers etc. I talked to his social worker from the VA and asked about transferring him to Ft.. Lauderdale. She gave me the numbers to call. I think I will ask Tumbi to take care of that since she is close to the facility. I also talked to the social worker at the nursing home. She gave me information on completing the POA and info on applying for Medicaid for Zan. There are a lot of documents required and I don’t know how I’ll get them yet. I talked to his physical therapist who suggested that he be moved to reconstructive therapy for a while where they concentrate more on just getting some range of movement rather than trying for strength or anything.

May 8 – Received a call from the health center saying that Zan was having extreme problems breathing and the Roxanol doesn’t seem to be helping. Nurse said she was really worried and wanted permission to move him to the emergency room. I asked her to take him to emergency at the VA. Called Tumbi, Mark, Stacy, Paula, and Patricia to give them an update. Later, I received a call from the doctor at the VA. She told me that Zan had been admitted and was stabilized. He was dehydrated so they were giving him fluids by IV. I asked if his condition was life threatening – she said no more than it already was. I asked that Zan be kept at the VA rather than be moved again. She told me to call in the morning. I called and gave Patricia, Tumbi, and Mark updates. Paula called me to get update.

May 9 – Called VA, Zan was admitted to the palliative care unit. I found out that the VA in Ft Lauderdale didn’t have palliative care unit so I decided not to try to transfer him. Talked to Paula, who said she is planning to go down the weekend of May 17. I’ve talked to Mark several times about Zan’s boat. He wants access to Zan’s funds so he can get the boat out of storage. I have decided that I cannot make the boat a priority at this time, although I did offer to talk to the guy who has it in storage. Received conflicting reports on Zan’s status. One nurse said that he probably wouldn’t make it until the 17^th the other said that he was resting comfortably and looked OK.

May 11 – Zan passed away at 3:20 this afternoon. I am making plans to travel there now. My cell phone number is (301)922-1439.

….more to come